Hey folks–as a public service announcement I’m posting this email from the Genetic Alliance folks. They’ve assembled a terrific webinar series that cover hot topics in genomics research and privacy issues. I’m posting part of the email, but then will direct you to their page for the full list of upcoming webinars.
I’ve read the report1 and I thought it was really well done. But I’ve seen little chatter about it since among the genoscenti. I’m eager to hear more discussion about it. And it heated up in the public sphere recently with the publication of that paper that identified donors to the 1000 genomes project2. One of the webinars is specifically targeted to ancestry information and WGS (the December 10th one).
What about Privacy and Progress
in Whole Genome Sequencing?
A Year-Long Webinar Series
Registration is free: http://www.geneticalliance.org/webinars
The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it concludes that “to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and secured”. In their words: “As the scientific community works to bring the cost of whole genome sequencing down from millions per test to less than the cost of many standard diagnostic tests today, the Commission recognizes that whole genome sequencing and its increased use in research and the clinic could yield major advances in health care. However it could also raise ethical dilemmas. The Commission offers a dozen timely proactive recommendations that will help craft policies that are flexible enough to ensure progress and responsive enough to protect privacy.”
Many people contributed to this report over a year. The committee worked hard to distill a great deal of information into a cohesive set of recommendations. It is important that this information be disseminated, discussed and built upon. This year-long series will use the report structure as the basis for discussion. We’ll explore each recommendation, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy.
Genetic Alliance offers this series of monthly webinars, on the second Tuesday of each month at noon, beginning in February 2013 and ending in December. All webinars are free of charge and are also archived for later viewing. In general, the webinars will last one hour and leave ample time for questions and answers.
[snip–go to the webinar page for the full list: http://www.geneticalliance.org/webinars ]
The commission + report they are referencing is this one: http://www.bioethics.gov/cms/node/764
1Presidential Commission for the Study of Bioethical Issues (2012). Privacy and Progress in Whole Genome Sequencing www.bioethics.gov
2Gymrek, M., McGuire, A., Golan, D., Halperin, E., & Erlich, Y. (2013). Identifying Personal Genomes by Surname Inference Science, 339 (6117), 321-324 DOI: 10.1126/science.1229566